Interesting

The baby born with her heart growing OUTSIDE her body: Premature girl beats eight-in-a-million odds to survive and defies doctors who gave her 'next to zero' chance

14:30, Wednesday, 13 December, 2017

She was the size of a grape in the womb when doctors diagnosed a rare condition and put her chances of survival at 'next to zero'. But baby Vanellope Hope – whose beating heart grew on the outside of her body – has defied eight-in-a-million odds and is three weeks' old. It took an incredible team of 50 doctors, midwives and nurses to safely deliver her in an operation rarely successfully performed in Britain. And her joyful parents – who had dismissed early advice to terminate the pregnancy – showed off the miracle daughter they never thought they would have. Vanellope is recovering from three extraordinary operations to relocate her heart from outside her chest to inside her body. Her condition, ectopia cordis, was discovered during a scan at nine weeks into pregnancy. Expectant mother Naomi Findlay, 31, recalled: 'I burst into tears. The condition came with so many problems.'

Her partner Dean Wilkins said: 'We were told our best bet was to terminate and my whole world just fell to bits.' Miss Findlay added: 'All the way through it, it was 'the chances of survival are next to none, the only option is to terminate, we can offer counselling', and things like that. 'In the end, I just said that termination is not an option for me. If [death] was to happen naturally, then so be it.' The parents were warned their baby might have chromosomal abnormalities, potential damage to her heart and circulation, and was unlikely to even survive until birth.

But hope began to return when Frances Bu'Lock, consultant paediatric cardiologist at Glenfield Hospital, Leicester, conducted further scans at 13 and 16 weeks and discovered that – apart from her heart being in the wrong place - Vanellope 'appeared essentially normal'. Mr Wilkins, 43, said: 'When she starts moving her arms, you feel like, 'That's a life in there, she is there'.' Undeterred in their fight for their baby, The couple, from Nottingham, paid for a special blood test to check for chromosomal problems. Mr Wilkins said: 'When the results of that test came back as low risk of any abnormalities, we jumped up and down in the living room and cried. At that point we decided to fight to give our daughter the best chance of surviving.'

Doctors began drawing up a hugely complex plan, conducting ultrasound and MRI scans on the baby's chest wall, lungs and brain. Dr Bu'Lock said: 'We came together as a team of fetal medicine doctors, obstetricians, anaesthetists, cardiac and abdominal surgeons and cardiologists to review all of the available information and discuss how best to plan for a delivery, surgery and subsequent care. 'It was decided that delivery by caesarean section would be best to reduce the risks of infection, risks of trauma or squashing of the heart during delivery, and that surgery to provide some sort of covering to the heart would be needed immediately after baby was delivered.' When she was 35½ weeks' pregnant, at 9am on November 22, Miss Findlay was wheeled into a cardiac theatre at Glenfield Hospital. She met the 50 doctors, midwives and nurses who were split into four teams to deliver the baby, keep the mother safe and carry out the complex heart surgery. At 9:50am, baby Vanellope was born. Miss Findlay recalled: 'I started to panic. I actually felt physically sick, because I thought there was a big possibility I wouldn't be able to see her, or hear her, or anything really. 'But when she came out and she came out crying that was it - the relief fell out of me.' Mr Wilkins said: 'When she cried, we cried. I felt hopeless and just held onto Naomi and was staring into her eyes praying that it was all going to be ok.' Vanellope - and her exposed beating red heart – was immediately wrapped in a sterile plastic bag and was whisked to the next team in an adjoining theatre. Her head was kept outside the bag, with a woolly hat to keep warm. Consultant Neonatologist Jonathan Cusack said: 'The bag keeps the organs sterile but also keeps the tissues moist. We inserted a breathing tube into her mouth and gave medications to sedate her and stop her moving. 'Vanellope was born in good condition. She cried at birth and coped well with the early stabilisation and her heart continued to beat effectively.' Around 50 minutes after birth, Vanellope was stable enough to be transferred back to the main theatre - where surgical teams began the task of putting her entire heart back inside her chest. They carefully stretched apart a tuppence-sized chest hole to create more space for the heart, and installed a protective membrane over the beating organ. Over the next nine days, lying on her back in intensive care, Vanellope's heart gradually sank into the hole in her chest.